When you’re living with multiple myeloma, you wait for the other shoe to drop.
Maybe you’ve been in remission or stable for months or even years. But this rare, incurable blood cancer never really goes away. Multiple myeloma relapses are common. In some people, treatment doesn’t work or stops working. Their disease is called “refractory.”
You hold your breath and hope for good news every time you get blood tests or other checkups for your myeloma.
At some point, “the postman brings the letter you’ve been expecting,” says Yelak Biru, CEO of the International Myeloma Foundation and a person living with multiple myeloma.
Unfortunately, you can’t mark it “return to sender.” Your myeloma needs more treatment. You have to live with the uncertainty of what comes next.
Emotions and RRMM
Relapsed/refractory multiple myeloma (RRMM) brings on a flood of emotions.
Understandably, you’re probably scared. Talk to your medical team about the true reality of your situation. Some fears may be exaggerated. Make sure you understand all the treatments open to you and what you can expect. Now, there are more than a dozen drugs to treat myeloma and even more drug combinations to try.
In addition to fear, you may feel:
Hopelessness. It’s common to have many relapses when you have multiple myeloma. Maybe the relapses are coming quicker than they used to. You may be losing hope and stop planning for your future.
Consider this: Biru was diagnosed when he was 25 years old back in 1995. He was told he’d be dead by the time he was 30. He and his wife decided not to start a family. But aggressive chemotherapy kept his myeloma at bay until 2001 when he had his first relapse. He’s had four more since then. Thanks to many new treatments through the years, Biru has lived many decades past his original prognosis.
“I am one of the ‘unlucky’ lucky ones,” he says. Unlucky to get multiple myeloma in the first place, but lucky to be able to live over half his life with myeloma.
Anger. It’s natural to get mad when cancer returns or won’t get better with treatment. You may even aim your anger toward yourself. You may wonder if your lifestyle is at fault. Or maybe you feel like you didn’t follow the doctor’s orders correctly. Don’t blame yourself. Focus on healing and living as well as you can – now.
Sadness. You may feel blue and not want to do much of anything. It’s normal to feel down, especially if you’ve been dealing with the ups and downs of multiple myeloma for years. Many people describe a sort of a “malaise,” says Victoria Puzo, a licensed clinical social worker and online support group program director at CancerCare, a national patient support organization headquartered in New York. Malaise can be described as feeling something just isn’t right.
Worry. It’s human nature to be concerned about the toll more treatment will take on your entire family. You will have days you feel good and days you won’t. Many couples say “we” have multiple myeloma, it just manifests in him (or her), Biru says. More treatment can hit your wallet hard, too. You may worry about how you’re going to pay and still find money to live on. Ask your doctor, medical center, or organizations like CancerCare for help with financial concerns.
When Emotions Take a Toll on Your Body
When your emotions are in turmoil, you can actually feel sick. But when you have cancer or are in treatment, it’s hard to know what’s making you feel bad. Try to keep track of when you feel symptoms and tell your doctor. Some common ones include:
- Change in appetite
- Trouble sleeping
- Feeling tired or fatigued
- Headaches and body aches
- Stomachaches, constipation, or diarrhea
Feeling anxious can lead to a fast heart rate or even a panic attack. Symptoms of one usually come on suddenly and reach a peak in about 10 minutes. Signs of a panic attack include:
- Chest pain and trouble breathing
- Sweating or chills
- Feeling like you’re choking
- Feeling out of control or like you’re “going crazy”
Since some symptoms can point to a life-threatening problem like a heart attack or allergic reaction, call 911 if you have any chest pain or trouble breathing.
Sometimes, a cancer relapse can lead to problems with anxiety or depression. Tell your doctor if you are down most of the time, lose interest in your normal activities, or have a lot of trouble concentrating. You may need counseling or medication.
If you have thoughts of suicide or harming yourself or others, call 911 right away.
Tackle RRMM With Support
Family and friends may be your biggest supporters each day. Although they walk beside you, they can’t walk in your shoes. Connecting with others who do get it can help.
Support groups. One of the best things about support groups is that you learn what you’re feeling is a lot like what others are feeling, Puzo says. Look for one that brings together others with multiple myeloma. You may find others are on the same treatments you are and can share what side effects you’re all feeling and what people do to lessen them.
“You are not the first person to relapse. There is a playbook someone else created and you don’t have to recreate that playbook,” Biru says.
Some support groups are in-person but many others can be found online. While you’re on treatment, it may be safer to stay virtual, especially because of COVID-19. Ask your medical team about support groups or search the International Myeloma Foundation, CancerCare, or other cancer organization websites.
Search social media sites like Facebook for private groups, too.
Peer-to-peer support. Sometimes a big group can be overwhelming. One-on-one support may be more your style. Many organizations including the Leukemia and Lymphoma Society can connect you with a mentor with multiple myeloma.
Spiritual support. If you’re a person of faith, turn to your spiritual leaders for guidance, support, and comfort. Be honest if your diagnosis is shaking your beliefs. Even if you’re not spiritual, accept the good wishes and prayers of others, Biru suggests.
Take Care of Mind and Body
Now is the time to focus on you. First, eat as well as you can and get proper sleep. Listen to your body and work some other self-care into your daily routine
Be mindful. There are many ways to be mindful, Puzo says. Yoga is one, and even walking and listening to music works. Download an app and try guided meditation, even for 5 minutes, she adds. Mindfulness relieves feelings of stress and anxiety and helps keep you grounded and centered, Puzo says.
Exercise. Do workouts that your doctor has given the green light to and ones you feel up to. Try walking for 20 minutes. It’s good for your overall health and fights stress by raising “feel good” hormones called endorphins.
Smell the roses. Get outside into the sunshine and fresh air, even if it's just for a few minutes. “I think most of us see a difference in ourselves when we are able to get outside. Nature is a good distraction,” Puzo says.
Do what you love. Whether it’s gardening, photography, or cooking, carve out some time to get into whatever brings some passion to your life.
Relapsed/refractory multiple myeloma can take the wind out of your sails. Biru stresses that educating yourself about the latest treatments, finding support, and minding your emotional health can help you handle the diagnosis.
“Myeloma will knock you down, but you can choose to get up,” he says.
Photo Credit: Courtney Hale / Getty Images
American Cancer Society: “Anxiety,” “Managing Distress.”
Yelak Biru, CEO, International Myeloma Foundation and a person living with multiple myeloma.
City of Hope: “Coping With Your Emotions When Cancer Returns.”
Cleveland Clinic: “Emotional Stress: Warning Signs, Management, When to Get Help.”
National Cancer Institute: “When Cancer Returns.”
Victoria Puzo, licensed clinical social worker and online support group program director, CancerCare.